Our Research | Boston Children's Research

At the Pediatric Serious Illness Communication and Care (PediSIC-Care) Lab, we are dedicated to improving the experiences and outcomes of children, adolescents, and young adults living with serious illness — and the families who love them. Our research bridges the disciplines of pediatric critical care, palliative care, health services research, and narrative medicine, aiming to transform care at the bedside and beyond.

Our focus areas

Serious illness communication and advance care planning

We develop and study innovative tools and interventions to support meaningful conversations between clinicians, children, and families about goals of care, hopes, fears, and preferences during serious illness. Our work aims to ensure care aligns with what matters most to families while preparing them for all possible outcomes.

Health services and outcomes research

We use mixed-methods research to examine patterns of care, disparities in palliative care utilization, and the quality of communication and decision-making in pediatric critical care settings. Our goal is to generate evidence that informs practical interventions to enhance patient and family outcomes, improve quality of life, and promote health equity for children with serious illness.

Bereavement and legacy

We investigate the experiences of families who have lost a child to critical illness, exploring grief, memory-making, and the impact of communication on long-term family well-being. Our goal is to develop resources and practices that support families both during a child’s illness and in bereavement.

Narrative medicine

We integrate narrative medicine into our research and teaching, recognizing that stories—and the words we choose or leave unsaid—profoundly influence how families experience illness, hope, and loss. Dr. DeCourcey’s narrative writing helps shape our approach to clinical care and research, emphasizing empathy, clarity, and humanity in every conversation.

Featured research projects

Pediatric serious illness communication (PediSIC) program

Led by Dr. Danielle DeCourcey, the PediSIC Program is a structured communication intervention designed to improve advance care planning for pediatric patients with serious illness and their families. The program includes clinician-facing conversation guides, patient and family pre-conversation worksheets, clinician training materials, and an EMR documentation module. Early studies show the PediSIC Program may improve therapeutic alliance and reduce patient and family anxiety.

Read the study in JAMA Network Open

Palliative care utilization following pediatric out-of-hospital cardiac arrest (OHCA)

Led by Dr. Suzanne Gouda, this research investigates the use of palliative care among children admitted to the PICU after experiencing an OHCA. The project seeks to identify barriers to palliative care and develop strategies to improve communication and support for families after sudden unexpected death.

Pediatric Serious Illness Communication & Care (PediSIC-Care) Lab Our Research